Transgender, nonbinary people often misgendered on death certificates, first-of-a-kind study finds

October 5, 2022

Epidemiologists from Multnomah, Washington and Clackamas counties released troubling new data this week about the fundamental accuracy of death certificates for people who identified as transgender and nonbinary.

In their paper,Transgender and Nonbinary Deaths Investigated by the State Medical Examiner in the Portland, Oregon, Metro Area and Their Concordance with Vital Records, 2011-2021, made available online for free for 14 days by the Journal of Public Health Management & Practice, the researchers found that more than half of transgender and non-binary people who died during this time period were misgendered on their death certificates. 

And that gap can be costly: death certificates are used for reporting a region’s vital statistics, which can influence the allocation of federal and state resources, for needs like social services and public health programs.

“What we learned will likely alarm anyone who identities as transgender or nonbinary – or anyone who cares about the rights of transgender and gender nonconforming people,” said Kimberly Repp, chief epidemiologist for Washington County and study co-author. “When a population is not counted, it is erased.”

In the study, the researchers detail how those barriers further harm people who already experience increased health risks and disparities compared to cisgender people. They also cite the following barriers to correctly identifying transgender and nonbinary people in state and federal death data:

  • Most coroner/ medical examiner case management software does not include a field for gender identity.
  • There is no national requirement for death investigators to undergo training on how and why to capture information about a decedent’s gender identity.  
  • And next-of-kin, who may not support that person’s gender identity, have the power to unilaterally declare a decedent’s sex on a death certificate, a process known as “nonconsensual detransitioning.”

To conduct their study, Repp and co-authors Jaime Walters, a senior epidemiology research associate with Multnomah County Public Health, and Molly Mew, a population epidemiologist with Clackamas County Public Health, identified 51 deaths in transgender people in the tri-county area from January 2011 through September 2021. 

They used the narrative section of the medical examiner reports, since there is no field in the medical examiner case management software that captures this information. They then compared the medical examiner records with the official death certificates for 47 of the deaths.

The researchers say that in an ideal world, these two systems should match identically. But what they found was disturbing: there was no concordance between the two. More than half of the people — 29 out of 47 — were misgendered on their death certificates and the highest error rate occurred in transgender women. Of the 33 transgender females who died during that time, 20 were identified as male on their death certificates.

“If you are a transgender person in the Portland Metro area there are no formal systems in place to ensure that your gender identity will be honored at the time of your death,”  Repp said.

Kimberly DiLeo, chief investigator with the Multnomah County Medical Examiner’s Office, is calling for more to be done. “Our office has strongly advocated for appropriate changes within the database and we have been proactive in training our staff to record gender identity,’’ said DiLeo, whose jurisdiction is the largest in Oregon. “We are also working to provide formal training for the tri-county region, but without adequate tools to collect this data and changes at a national level, we are limited in what we can do.” 

National struggle for accurate gender data

Transgender people experience violence and discrimination at rates far higher than cisgender people. Transgender and nonbinary people also experience higher rates of poverty, mental illness and substance use disorders. And they are more likely to become victims of homicide and suicide. In this study, most of the deaths (69%) were attributed to suicide.  

But researchers say they are unable to establish the extent of those disparities because no agency routinely collects this information about gender identity at death – and because national and state-level databases, including those in Oregon, don’t offer easy paths for entering the data. 

Oregon contracts with the Michigan company Occupational Research & Assessment for use of its death investigation tracking software, MDILog

The system offers hundreds of data fields, including cause, manner and location of death, next-of-kin, field notes and narratives. It has designators for deaths that occurred on an “Indian reservation” or “within city limits”. The system offers many options for describing a decedent: their height, age, hair, eye and skin color, race, ethnicity and country of birth. It allows for identifiers such as athletic status and education level, and whether the decedent was an “undocumented border crosser” or “had sex for money or drugs.”

But in the field for describing someone’s sex or gender, only three options are available: “male,” “female” or “unsure,” a term only used in cases where the sex cannot be determined from the state of the remains, helping to further erase intersex identities.

MDILog does have one area where “transgender” is a standardized option to record a person’s sex: on a supplemental form that can be used in cases of suspected suicide. 

Death investigators complete the “sex” field using information found on the decedent’s driver’s license or using physical identification found at the scene. 

But few transgender people, a national survey found, go through the timely, costly and cumbersome process of changing their government identification to match their gender identity. That means more often than not, the sex on the legal identification is likely to be inaccurate. 

Compounding the risk of misgendering the decedent is the role of next-of-kin and the funeral home.Typically in Oregon, a funeral home director enters the final information about the decedent’s sex in the official death certificate. And that’s based on interviews with the legal next-of-kin. But if that next-of-kin is either unaware or unsupportive of the decedent’s gender identity, they can choose to misgender that person after death. The term that’s come to define this phenomenon is “nonconsensual detransitioning,” a type of gender bias after death.

“From the data standpoint, this is a simple problem to fix,” said study co-author Molly Mew. “The systems just need more inclusive boxes. Death investigators, medical examiners, and funeral directors often know how a decedent identifies, they just don’t have anywhere to document that. The bigger challenge is the culture shift we need for people to recognize why we need good data on gender identity.” 

Change laws, standards to protect rights

The success of public health interventions, such as harm reduction, hinges on access to comprehensive and timely death investigations. And unlike vital records, death investigation data provides near real-time information since, by Oregon statute, information must be reported within five days of the investigation.

“Our findings demonstrate the significant implications for transgender individuals in a death system where

they are systematically unable to be recognized as their chosen identity after death in nearly every part of the death process,” researchers wrote.

The researchers make the following recommendations to improve data collection, facilitate analysis and ensure that individuals’ identities are respected after death. 

Those recommendations are:

  • Enact laws that mandate recording of gender identity to reduce nonconsensual detransitioning after death.
  • Ensure that fields on death certificates and case management systems allow for gender identity to be recorded in place of, or in addition to, sex assigned at birth.
  • Require death investigators and funeral directors to attend formal training on how and why to collect gender identity information.
  • Give funeral directors power to use gender identifying documentation enacted by the decedent prior to death specifying their gender identity, rather than relying solely on next-of-kin.